Not Joking: Why I Won’t Be Playing a Card Game That Directly Oppresses My People

 

Wow. Am I exhausted! Not just now, but always.  Living my life means living in a perpetual state of exhaustion, punctuated by short spurts of productiveness brought to you by the makers of caffeine. It’s not just the physical and mental work I have to do to keep myself alive and in decent shape – it is dealing with and living in a society that constantly forces me to prove myself to them and which never, ever lets me let my guard down. I truly think that one of the most tiring and depressing things about living with a disability, especially a developmental disability, is dealing with micro aggressions on a day to day basis.

                A micro aggression, if you didn’t know, is a subtle form of discrimination faced by oppressed groups.  For example, a racist microaggression is when someone crosses the street when a person of color is walking near them.  A transphobic microaggression is when a form only has two boxes, male and female, for gender.  An abelist microaggression is people assuming that intelligence equals IQ, or that someone’s verbal abilities represent their actual ability to express their thoughts.

                The thing about micro aggressions is that you aren’t always prepared for them.  They come at you constantly, but at irregular intervals.  Each one is like a punch to the gut.  Each one leaves me a little bit tired.  Dealing with them over and over and over, however, leaves me exhausted beyond belief.

                I will give you an example.  A few years ago a card game came out called ‘Cards Against Humanity’.  It was a rip off of ‘Apples to Apples’, which is a fun, easy game about comparisons.  I love words and I process language much better than I do other forms of media, so I love Apples to Apples.  It’s easy to learn, fairly quick, and requires no strategy or skills that I don’t have.  (Unlike, say, Settlers of Cataan, where you are expected to not only plan your moves but predict other’s moves.)  So when my friends started playing ‘Cards Against Humanity’, I joined in, thinking it would be a fun way to spend an evening.

                As it turns out, it was an exercise in ‘do I speak up or do I stay silent in the face of micro aggressions’.  The game works with white and black cards.  On the black card is a situation or a question with a blank in it.  Each player is given a number of white cards which they submit to the person who is the dealer that round.  The dealer picks the white card they think fits best.  It works the same way as Apples to Apples, except that these cards, I quickly discovered, are not mean to be fun.  They are meant to be mean.  And they succeed.

                I remember coming across the white card ‘the profoundly handicapped’.  I’m the first to admit that disability is funny, but disability is only funny in a specific context in the disability community.  I know many people who would fit the description, ‘profoundly handicapped’ – although the makers of the game clearly didn’t know that the term handicapped went out about 30 years ago and the term is disabled now.  When I read that card, I thought of people I know – Sean, who mentored me and gave me my first political job, Missy, who never spoke a word but whose blue eyes and wild laugh fill my heart with joy, Brooke, who’s knock-knock jokes never fail to crack me up.  I thought of my friends who have fought medical battles and refused DNRs, who have been knocked out by a seizure and gotten back up on the stage, who have given me support when I needed it most, driven me to the ER when I was in a crisis, texted me back in the middle of the night.

                I quietly removed that card from the deck.  I then went through the cards and removed a few more, ones that referenced things like dwarf-tossing.  I thought of my friends who are Little People, and whose bones break so easily.  My stomach twisted as I imagined them being tossed in the air, the butt of a joke.

                Cards Against Humanity is an excellent example of how society normalizes micro aggressions.  Because all of the cards are meant to make people laugh, people get into the mindset that no one card is worse than the other.  This is not true.  The basic fact is that oppressed groups do not have the social capital to defend themselves against an onslaught of micro aggressions because they are so busy dealing with bigger macro aggressions.  We are trying to ensure our basic civil rights, so a card game or the off-color joke a cousin tells is simply too small to bother with. 

                This bothers me, because I think that small micro aggressions such as this card game, which normalizes making fun of people with disabilities, black people, Jewish people, really any minority group that you can think of, lead to bigger micro aggressions.   It allows people in privileged positions, such as white, cis, nondisabled men, to laugh with no repercussions.  They do not see how their laughter directly impacts public policy.  But the fact is that a guy who thinks making fun of ‘the profoundly handicapped’ is okay is not going to speak up when a bill comes to cut special education funding, because due to this card, he has already ‘othered’ that group.  The normalization of racism, where white people ‘othered’ POC, can be said to be a direct cause of segregated schools, red-lining and sundown towns.  The normalization of making ableism means that nobody notices the lack of disabled people and disabled voices, and it is very hard to complain about a public policy when the policy makers are meeting in an inaccessible room. After all, w e don’t care about ‘others’, we care about ourselves.

                Sometimes I feel that I straddle two worlds.  On the one hand, I’m an intelligent, white woman, raised upper-middle-class, with a master’s degree, and I always appear put-together if I step outside my door.  On the other, I’m surviving on social security, struggle mightily in day-to-day tasks, and spent years in special education, which means that my knowledge has significant gaps.  I do things slower – I process things slower, I respond slower, I even walk slower.  This doesn’t mean that I’m lesser than my friends who do things fast.  It just means that I’m different, and that’s okay. 

                Because I process things slower and make decisions slower, it took me a few years to be able to stop ‘editing’ the cards when we played Cards Against Humanity, and instead, to decide that I was no longer going to play at all.  I decided that by playing, I was contributing to my own and other’s oppression.  I was saying that it was okay with me for others to make fun of people.  And it’s not.  It is not okay to make fun of people. It is not okay to treat them badly.  The game made me a worse person.  It made my friends worse people.  It did not encourage us to be our best selves or our kindest selves, and if there is one thing I know for sure in this world, it is that you’ve got to, you’ve simply got to be kind.

                Luckily, as my friends and I matured, scatological humor lost its funniness.  We moved on to other things, other pursuits.  Many of my friends are deeply involved in progressive political causes, and a number of them have children whom they would never, ever expose to a game like Cards Against Humanity because they want their children to be kind, generous, humble human beings.  Whoever made that card game was none of those things.  They might think they are, but they are not.

                Somewhere in the Bible, somebody, I’m pretty sure it was Jesus but what do I know, I’m a UU, says something along the lines of, ‘remember that whatever you do to the least of mine you do to me’ – basically, however you treat any oppressed group is also how you’re treating those closest to you, those you love, because we are all the same.  We are all humans, and living in this society we all contribute to micro aggressions.  And if you wouldn’t want your mother or best friend to feel hurt – physically hurt, like a knife in the gut, like a PTSD-flashback to being called the r-word in 3rd grade, like a nightmare that leaves you sweaty and screaming – then you shouldn’t hurt anyone.

                I’m not quite there yet, but micro aggressions can only be driven out of society by micro actions. By publicly refusing to play Cards Against Humanity, I’m publicly saying that it is not okay to treat people that way.  Missy cannot speak but she does not deserve to be made fun of, and neither does anyone else I know.  They deserve kindness.  So do you.  So do I. 

PS. MicrosoftWord says that microaggression is two words. I’ve seen it written as micro-aggression, micro aggression, and microaggression.  I’ve truly no idea which one to use so I have used all three.

PPS.  I sent this essay to a friend of mine to review.  He disagreed with me because, he said, the makers of Cards Against Humanity do good things – they donate to anti-Trump causes, they believe in the same progressive politics that I do.  From the research I’ve done this appears to be true.  However, I do not think that this excuses their abhorrent behavior.  They continue to profit from the direct oppression of others.  This is inexcusable.  In a time when the vast majority of people with disabilities live in poverty, their jokes about ‘the profoundly handicapped’ keep us down while allowing them to live, I assume, at least comfortable lifestyles.  (Because no matter how much money they donate to charity, I’m willing to bet my non-existent cash that they don’t skip meals or deny themselves basic necessities of life to save for their prescriptions.) The only way to solve this would be for the creators themselves to publicly denounce the game, admit they were wrong, stop selling it, and donate any profits they have left over to causes which directly impact the people they made fun of in positive ways. 

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Why I Dislike Vocational Rehabilitation

I make no secret of the fact that I dislike my state’s rehabilitation commission, or SRC.  It is the state agency that is charged with helping disabled people find and keep jobs, but despite my having worked with them for over a decade, they have never actually found me one.  They have never actually helped me in any way.  Every employment opportunity that I have had is the direct result of my own hard work and making connections – it has nothing to do with them.  Yet, a requirement of receiving social security disability is that you work on getting a job, and so again and again, I find myself in a small, closed room with an overworked, underpaid counselor.

Recently, in order to save money, the state announced that they would close the current SRC office that I go to.  They printed flyers about how they were ‘moving’, and this angered me, because they were not moving.  They were closing.  The office – a windowless warren of rooms behind a Chinese restaurant that somehow always smelled bad and where the only parking available was for one-hour increments – was closing.  The counselors were being scattered – some close by, some much further away.

With only a few weeks notice, they held a meeting. I, being the kind of person who truly wants to improve the services I receive, showed up.  Unfortunately, due to a confluence of factors – the short notice, the difficulty of the location, the fact that it was on a night when many other meetings were taking place – I was the only consumer there, aside from two young adults brought by their parents, neither of whom said anything.

I entered the room.  A stranger asked me who I was – not for the first time, because I don’t have a visible disability and was dressed neatly in a sundress and sandals, I was mistaken for a disability professional.  (Which I am.  I just also happened to be a SRC client.  They had trouble with this concept.)

“Oh, who’s your counselor?” they inquired then.

I told them.  “Name, name.”

“Oh she’s awesome!” they enthushed.

I considered.  I considered the fact that in three years I had yet to get a viable job lead from her and that she had outright said that my many medical problems made helping me look for work difficult.  “Well,” I said with as much diplomacy as I could muster, “that’s one opinion.”

The truth is that I like my counselor.  She’s a good person who shares similar values to mine.  But as an actual vocational rehabilitation counselor, she has done almost nothing for me.  I would say that is a failing of her, except that I have had other counselors who also did nothing.  By this point I have basically concluded that it is the agency, not the individuals, that is the problem.

About two dozen people eventually showed up, the vast majority being staff from the office that was being closed.  It began badly because there was no microphone.  None of the staff thought that this was a problem because ‘they could all talk loud’.  To me it was a simple matter of accessibility – I mean, the meeting is supposedly for disabled people and you don’t have a microphone? Nope.  They don’t.  and they don’t care, and then – the Commissioner entered, the person in charge of the entire state agency.

“I’m 99% certain that this is just going to be a gripe fest,” I texted a friend.  To nobody’s surprise, I was right.  What I was surprised by was how the Commissioner seemed unable to deviate from her script, how she truly did not seem to care about the consumers or the staff, and how incredibly ableist her comments and attitude were.

Commissioner lied.  This is a basic fact.  The flyers that her office printed out and mailed said that the office was moving.  Moving implies packing up an office and relocating it to a different place.  They were in fact closing.  Just because everyone at Dunkin Donuts is now working at another Dunkin Dontus doesn’t mean that the empty Dunkin Donuts is still open.  If you can’t physically go to a place and find the same staff and administration, if you have to go two cities over to another Dunkin Donuts entirely, then it hasn’t moved.  It has closed.  The employees, of course, denied this.

The commissioner readily admitted that she didn’t have a disability, and that she knew that her hiring, last summer, had been somewhat controversial.  But!  She took pains to point out, she did have a very good sob story about a family member with a disability.  No, she didn’t have a background in disability services or vocational rehabilitation or disability studies, she had a background in workforce development, but! She had shadowed a counselor for an entire day! So she knew exactly what it was like.

I stared at her with what I hoped was an expression of utter no-shitting-me.   I asked, “If you were asked to be the head of the NAACP, would you accept the position?”

Commissioner is white.  I had hopes that she would understand the metaphor.  Despite my being the autistic one, it went right over her head.  “Yes,” she said.  “If they asked me to, yes, I would.”

It was at this point that I probably should have left.  Instead I kept texting my friend (which is why I have such accurate notes on what happened despite it happening a few months ago.)

I learned that 67% of consumers were under the age of 35, which was why the agency was focusing on them and on high school aged youth, because people had to get into the work mindset early.  I didn’t understand.

“What makes you think that you’re doing such a good job with those over the age of 35?”  I asked.  “What are your statistics there?  Are they all getting jobs and enabling you to focus on young people?”

Commissioner and her staff had no answer but assured me that they could get me the statistics.  I declined.  I knew that any statistics they gave me would more than likely be bs.  Just a few years earlier, after all, the agency listed me as having a full time job, a total success, when in fact, it was an eight-hour-a-week academic fellowship for nine months.

The office was closing because of lack of money.  Period.  There was no money, the money didn’t exist, they didn’t get it, blah blah blah stuff I don’t understand.  The building owner, seated at the back, offered on the spot to reduce the rent to 1/3 of what it was now.  The Commissioner said nope, there was no money.

“But you’re asking staff to drive more to meet people?”  a counselor who was being relocated asked.  “And to meet them in the community?  And to move all of our offices to X, Y, and Z?”
“Yes,” the Commissioner said.  (Later on at the meeting she would emphasize how staff should be driving less to save money.  This was the point where I began to look for her second head.)

“So how much will that cost?  Will it be comparable to the rent?”

Commissioner didn’t know.  She had absolutely no idea of how much it was costing to move the office or if the savings would make a significant dent in the budget.  She just knew that by crossing an item off a list, she could save X dollars a year.  She didn’t care about the fact that moving offices was not just a hardship for the counselors, it was a hardship for the clients, too.  The office that my own counselor is moving to is one where I had numerous meltdowns because counselors there insisted I act neuro-typically and I was unable to do so.  I am scared of that office.  I am scared of the people I might see there.  My counselor knows this.  She says we can maybe meet at X library.

“You mean the library where that guy was stabbed last fall?”  I was shocked.  “I don’t want to go there!  It’s scary!”

The commissioner engaged a lot with me because I was the only consumer engaging with her.  She admitted that she needed a lot of guidance and help from disabled people, but shut me down when I said I was happy to do so only I was a professional and I expected to get paid.

“It’s a huge change for everyone,” she said.

Well, yes….but it’s worse for us.  I have meltdowns over daylight savings time.  It is really, really hard being disabled, it is a huge inconvenience, and she was moving people around like checkers, with no consideration whatsoever for our feelings and lives.

“You could always do skype meetings!” Commissioner suggested.  “Or Facetime!”

“Oh, no,” one counselor said, aghast.  “That would make it too easy for people.  When they have to come into the office, they have to get dressed decently and make it here on time, just like you would for a job.  It gives people practice.  Skyping would make it too easy for people because they wouldn’t have to leave their house.”

Given how incredibly difficult it is for many disabled people, including myself, to leave the house I was unmoved by this.  Also, I had no idea that I was being judged on my appearance every time I visit the SRC.  I happen to wear dresses and skirts a lot because they are more comfortable, but would showing up in jeans and sneakers mean that I’m not ready for a job?  Sheesh.  The counselor emphasized her master’s degree.  I felt like rolling mine up and whacking her with it.

The basic fact is that the state agency charged with integrating disabled people into the workforce doesn’t give a single flying squirrel about disabled people.  They have no idea how hard it is to live our lives, to juggle doctors appointments, to remember to eat and take meds and exercise and find housing in this brutal market.  They only care about statistics.  They couldn’t tell me how many people with disabilities were employed by SRC, only that they were the 2nd highest in the state in terms of the proportion of PWDs employed there.  They talked about entrepreneurship like it was a brand-new idea straight off the Starship Enterprise.  They listened, but they only heard what they wanted to hear.

I’m still disabled, they’re still jerks, and I still don’t have a job.

“When your health problems clear up,” my counselor tells me.

It is looking increasingly likely that my health problems will never clear up.  That I will always be as disabled as I am now, that I will always be in pain.  But isn’t the whole point of the SRC to show that disabled people can be good employees, that we can do things and achieve things?  Yet how can that ever be done when the Commissioner, who sets the tone for the entire agency, so obviously doesn’t care about the people whose lives she affects so much?

She doesn’t care.  So why should I?  So why do I?

“Imagine,” I said to her at the end as I handed her my card, “imagine if instead of being against you, I was working with you.”

I can imagine.  I can imagine a system of mutual respect, where strengths and not deficits are emphasized, where all people, regardless of disability or severity of their impairment or their age, are treated the same.  I can imagine.  It is too bad that the commissioner cannot.

When I Grow Up: A Social Security Story

When I grow up
I will be tall enough to reach the branches
that I need to reach to climb the trees
you get to climb when you’re grown up.

And when I grow up
I will be smart enough to answer all
the questions that you need to know
the answers to before you’re grown up.

And when I grow up
I will eat sweets every day
on the way to work and I
will go to bed late every night!

And I will wake up
when the sun comes up and I
will watch cartoons until my eyes go square

and I won’t care ’cause I’ll be all grown up!
When I grow up!
When I grow up, when I grow up
(When I grow up)
I will be strong enough to carry all
the heavy things you have to haul
around with you when you’re a grown-up!
And when I grow up, when I grow up
(When I grow up)
I will be brave enough to fight the creatures
that you have to fight beneath the bed
each night to be a grown-up!
And when I grow up
(When I grow up)
I will have treats every day.
And I’ll play with things that mum pretends
that mums don’t think are fun.
And I will wake up
when the sun comes up and I
will spend all day just lying in the sun
and I won’t burn ’cause I’ll be all grown-up!
When I grow up!

 

If you ask a small child what they want to be when they grow up, once they’ve gotten past the stage of wanting to be a cat or a dog, they will inevitably answer ‘a firefighter’ ‘a doctor’ ‘a truck driver’ ‘a princess’ or something along those lines.  As they get older, their dreams become more distinct, more realistic: ‘a marine biologist’ ‘a veterinarian’ ‘a lawyer’ ‘an artist’ ‘an elementary school teacher.’

I could ask a thousand children this question and although I might get a few confused looks, a few ‘I don’t knows’ and, inevitably, a few kids still convinced that they could grow up to be a fairy or cat, not one of them will ever say, ‘I want to be disabled’ because, well, being disabled isn’t a thing to be.  Even school age children know that in order to be a ‘real’ adult, you have to work and bring home a paycheck.  You have to support yourself.  That is, after all, the whole point of growing up: to become a contributing member of society.

When I was four or five, I wanted to be a doctor.  Then I found out how much school they needed and nope, off the table.  When I was in high school, I was determined to be a middle-school social studies teacher.  In college, I took all the right courses to become one, only to fail utterly at my internships because it turns out that passion for a subject couldn’t make up for the fact that my social skills were not up to being a teacher.  Around this time, as my identity as a disabled person came into being, I tried another internship at a disability rights organization.  I loved it.  I thought ‘I found my people!’ and knew right then that I was going to be a disability rights activist.

Which, over a dozen years later, it turns out that I am.  Too bad it never occurred to me that I couldn’t make a living doing it.

I remember, very clearly, being told that I needed to save money as a teenager, and that I needed to protect my savings, because by the time I was an adult, social security wasn’t going to be around.  They would run out of money, and I would need to support myself in my old age.  It didn’t occur to anyone then that I would possibly need social security before then.  After all, I was a bright, ambitious person with great references and internships behind me – who wouldn’t want to hire me?

As it turns out………every single place I’ve ever applied to.

I’ve said it before and I will say it again. The fact is that the majority of hiring decisions are made within the first few minutes of meeting someone based on their nonverbal cues and charisma. (https://theundercoverrecruiter.com/infographic-how-interviewers-know-when-hire-you-90-seconds/) I don’t have that.  Knowledge, yes.  Skills, yes.  Ability to care, yes.  Executive functioning……I can work around.  But charisma?  That is a shibboleth that I cannot manifest.

And so it was that last spring I started to apply for social security. Even then, I thought that it wouldn’t be for the long-term.  I had heard of several jobs in the area that I was sure I’d be perfect for.  As I did (okay, let’s be honest here, my mom did 99% of it) the paperwork, I thought, well, it will be nice to have for a few months to tide me over, but I’m sure that this job or that one will work out.  It really sounds perfect for me.  I really could do this.

But I couldn’t.  I didn’t qualify for my dream jobs.  I did qualify for social security. 

Not a lot, and the details of it I will keep private, but it is enough to live on if I’m very, very careful.  Which I am, because if nothing else, this process has taught me that you cannot be too careful.  You cannot be too cautious.  Hopes and dreams are fragile things, easily broken by a sudden gust of wind.  The problem is that when you’ve assumed for over thirty years that you would grow up to be a contributing, working member of society and now you find out that……..well………you won’t be, the realization cracks you like a piece of glass hit by a hammer. I grew up with the American idea of work hard, and you’ll get to where you want to be.  People who don’t work are lazy, they are drains on society.  The pain as I confront the reality of having to accept social security feels like shards of grass embedding themselves in my soul and heart.

I’m lazy. I’m useless.  I’m stupid.  I’m lazy.  The mantra repeats, over and over, again and again.  All of my worst dreams are coming true, even as another part of me feels genuine relief that I don’t have to worry about rent or food this month. If you had tried harder, you could have done it.  I know this isn’t true.  I know that I truly tried as hard as I possibly could.  This does not shut up the voices in my brain.

For all that I broadcast about disability acceptance, autistic strengths, nothing to be ashamed of – I am ashamed.  I am ashamed that I couldn’t make it in the ‘real world’ and ashamed that I may never be able to. 

“What would have happened if you’d gotten that dream job?”  my mom asked me recently.

“I would have burned out within weeks,” I admitted.

“Yes.  That’s what I think, too,” she said.

I got social security on my first try.  This is unusual.  Part of it, I know, is that my doctors knew what to write on the forms, but part of it is the part that I’m having that most trouble wrapping my mind around.  Yes, I’m that disabled.  Yes, I’m that impaired.  No, I cannot work full time – not now, probably not ever.

The United States government, after all, for all the talk of welfare and disability fraud, doesn’t actually make it easy to qualify as a disabled person.  There are dozens of forms to fill out, reports to be made, every IEP and therapist visit you ever had must be documented.  Luckily, my mother is an extraordinarily organized person so was able to find all of these documents with ease, dating back to when I was three and a half and the forms were mimeographed in purple ink (shoutout to whoever can still remember that smell.)  Still, my mind keeps coming back to the fact that, all along, I was actually more disabled than I ever thought I was.

Because the government doesn’t give out social security to people who are a little bit awkward or who have a little bit of trouble learning.  It gives it out to people who annoy others so badly that they ruin funerals and weddings.  It gives social security to those who have meltdowns, long, horrible, hours-long meltdowns, over the social security office running late with its appointments.  It gives it to people who cannot stop self-harming, who take enough psychiatric medication to knock out a horse, who cannot make back and forth conversation without help, who cannot organize themselves or fill out forms or budget on their own.  Who have no real understanding of the stock market despite having a graduate degree.  Who go to one meeting and are exhausted for the day. It gives it……..to people……..like me.

I feel the desperate need to make it clear here that I don’t want social security.  I don’t want to take away resources from other, more deserving people.  But there exists right now within me so many dichotomies, so many factions, I feel as if I am at war: I don’t want it, but I do need it.  I don’t think others should be ashamed of getting it, yet I am ashamed.  I don’t think that a person’s self-worth should be tied to their ability to contribute monetarily to the economy, yet mine is.  My ideals and principles are sound.  My feelings are another matter entirely.

Little kids know what adults do all day: they get up, they go to work, they come home.  Recently someone asked what I did all day.  I explained, and they said that ‘oh, so you basically do what everybody else fits in on the weekends and after work.’  I felt ashamed then.  I felt worthless.  Is my life just made up of hobbies, then?  Am I so slow that it takes me all day to do what others do a in a few hours?

I tell other people constantly that there is nothing wrong with being disabled, that self-worth should not be tied to your ability to produce.  That the American ‘dream’ has been directly damaging to disabled people by making us equate our self-worth with how much money we earn.  That disability and autism are not a tragedy.  I tell the parents of autistic kids to not despair, that their kids will be fine.  I tell and I tell and I tell, and sometimes, some days, some days like today, it feels as if I am telling a lie.

Because the truth is, that I don’t know if I will be fine or not.  I don’t know if the world will end tomorrow in the haze of an atomic bomb, but I am increasingly worried, increasingly certain, that it will.  Which begs the question, then, what is the point of doing anything?  Why should I try anything if we are all going to die tomorrow? How do I stand with my principles while at the same time making connections that I need with people who go against those principles?  How do I even attempt to look for paid opportunities when all my non-paid work fills up my days and nights?  How do I improve my physical health when staying on top of my mental health? 

I have too many questions and not enough answers.  I spend too much time reading and not enough time doing.  When people criticize me, I am quick to agree, but when people praise me I think that they’re being ridiculous because if they knew the real me, they would hate me, too.

A child was dedicated at my church recently.  The parents were asked for their hopes and dreams for their child.  Among other things (including that he would acknowledge his own place of privilege, which was cool) they wanted the baby to grow up to have satisfying work and good mental and physical health.  Their dreams, the dreams of any parent, didn’t include a disabled child.  Nobody grows up to think, oh, I want to be disabled.

“Just because you don’t get paid for it,” a friend reminds me, “doesn’t meant that you don’t work.”

This is true.  I do work.  I write, I volunteer, I research.  I’m trying right now to establish the history of slavery within my church and finding that it’s a much bigger project than I thought it was.  (I knew there were enslaved people buried in our graveyard, I didn’t know who they were.  It turns out that various historical societies have very different views on who they are and all are certain they are right.)

I bake, I read, I show up, I sing.  I take comfort in music and musicals, rituals and rain. 

I remind myself that I may be grown, but I will never stop growing, and I will never stop fighting, either.

 

When I grow up

I will be brave enough to fight the creatures

that you have to fight beneath the bed

each night to be a grownup
Just because you find that life’s not fair, it
doesn’t mean that you just have to grin and bear it.
If you always take it on the chin and wear it
nothing will change!
Just because I find myself in this story,
It doesn’t mean that everything is written for me.
If I think the ending is fixed already,
I might as well be saying
I think that it’s OK!
And that’s not right!
And if its not right!
I’ve got to put it right!

 

(lyrics by Tim Minchin from Matilda the Musical, song: When I Grow Up)

Congratulations! A Letter to Parents of Newly-Diagnosed Autistic Children

Someone who used to go to church with me recently contacted me because her son has been diagnosed as being autistic.  She asked what she should do.  Don’t do ABA! I said, and, I’ll get back to you later with more.  Well, it’s later, and, as it turns out, I have quite a bit more to say…….

Dear Lucy,

Congratulations!

You have a beautiful, bright child with unlimited potential.  And despite what doctors may or may not have told you when they told you his recent diagnosis, this fact will remain the same until Peter turns 18, at which point he will be a bright, beautiful adult with unlimited potential.

Also: welcome!

Welcome to the autism club.  It’s not a club that any neuro-typical parents ever want to be in, and many will denigrate.  They will say that you don’t want autism in your life, that it’s a burden, it’s too hard, they are tired of fighting, they are tired of their child’s behaviors.

So I’m asking you, firstly, to stop listening to parents.  With few exceptions (squidalicious, diaryofamom) they will not paint a very positive view and they will undoubtedly exhaust and overwhelm you.

Seriously.  At this point in your life, other parents of autistic kids have nothing to offer you.  They don’t know Peter, they only know their own child.   

Listen instead to autistic adults. We are the ones who have been there.  We are the ones who have years of experience in every kind of therapy imaginable and who can tell you, long-term, what worked and what didn’t.

Oh, and you’ve probably noticed this by now, but Peter doesn’t have autism.  He’s autistic.  The same way that you don’t have whiteness, you’re white.  It’s called identity-first language and is preferred by the vast majority of autistic adults. Google it to find out more.  (In future in this letter this will be abbreviated to GITFOM.)

Secondly, start listening, and learning, from Peter.  He may not communicate in a typical way, but he will still manage to tell you what is really important.

Be prepared that your life will be lived at a slightly different pace than before.  It will be slower, more meandering.  It will take you longer to get places and longer to leave.  It will also be a deeper, richer journey, and you will start noticing wonderful things about the world that you never knew before.  Peter’s interests will lead you to sections of the library and internet and quite possibly the planet that you had no idea existed. 

What are his interests, by the way? I’d really like to know, because his joy in his interests will be like an exploding star, so wondrous, so bright that it overwhelms you, and it overwhelms him, too.  He may start to flap or run around in circles.  That is called stimming, or self-stimulatory behavior.  The doctors may tell you that that’s not good, that you should discourage it.  That’s utter and total nonsense.  Stimming is a physical manifestation of emotions which are too big for the body to contain.  It can indicate sadness just as much as happiness. 

Let Peter delve into his interests. Do not limit him in how much time he spends on them.  Relate other areas of your life to them.  Let him decorate his room and parts of your house with relevant materials.  Buy him gifts related to his interests.  Treat them as seriously as you’d treat the thesis subject of a doctoral student, because to him, they are.  

His interests may change over the years.  Some may fade out and disappear, some may fade and remain as hobbies or things that make him just plain happy, not joyous.  Expose him to as many things as you can, as many experiences as he can handle.  Let him know that the world exists for him to explore, and share his joy in acquiring new knowledge and in sharing it.

Thirdly, spend as much time outdoors as humanly possible.  The outdoors is the natural environment for autistic people.  We thrive in woods, seashores, meadows, deserts, and mountains.  The loud electricity that surrounds us in the city, the busyness, the constant hurrying, does not suit our pace.  We take deliberate steps and look before we place each foot.  Nature is its own reward.  Spending time in nature will calm him down and tire him out.  Simple exploration of wooded areas, with no toys or props other than what you find, should be done for at least a few hours a week.  If possible, put up a tent or fort in your yard, let it grow a bit wild with the trees, and let him be free.  In touching sand, mud, rocks, and gravel, in building with sticks and string, in drawing patterns in the sand, in picking flowers and leaves, he will get occupational therapy.  In stomping through different textures of ground, in splashing in puddles, swimming in oceans and ponds, climbing and swinging from trees and jumping from one spot to the next he will get occupational therapy.  Walk on the earth, not on pavement. Go barefoot if it’s safe. When you feel he can be trusted with one, give him a sturdy kid camera if he wants it and encourage him to photograph whatever catches his eye.  It will be another window into his world for you.

Teach him to swim, if he can’t swim already.  Autistic people are drawn to water in general and you live near a river.  He must learn to swim, and swim well, as soon as possible for his own safety.  Teach him water safety, that the river is dirty and polluted (because it is, let’s be real here) and to stay away from it.  But give him opportunities to immerse himself in baths and pools and safe water sources as much as possible.  Push to get swimming added to his IEP as a physical therapy goal.  It is a very frightening fact that autistic children are more likely to drown than neurotypical children, GITFOM.

Teach him that he is different, (although there is no doubt that he already knows) and his difference is called autism in the same way that your difference is called blindness.  Expose him to autistic adults and autistic culture.  Treat accommodations as a matter of basic human decency.  Learn about disability culture and history, and add it as just another kind of justice, like justice for LGBT people or African-Americans or undocumented immigrants. Teach him that his difference may make some things harder, but it will make other things easier, and that together, you will always be able to find a way.

Let Peter excel.  Autistic people have common strengths, like our memories, our ability to express ourselves unconventionally, the way we can hear things others can’t, feel things others can’t.  Figure out how he learns best, visually or verbally.  Learn that he may not express emotions the way that you expect him to, but that doesn’t mean that the emotions are not there.  He simply shows his empathy in different ways.  Don’t ever, ever let anyone tell you that autistic people do not feel like neuro-typical people do, or that Peter *must* be forced to do this or he will never do it on his own.  That is pure nonsense.  Peter will do what Peter will do when Peter is ready to do it.

Unless a legitimate medical doctor truly thinks there is a reason for it, don’t bother with quack cures or cutting out gluten or dairy or any of the other ridiculous, expensive cures that charlatans will try to sell you.  Peter is already perfect.  He doesn’t need to be cured, he just needs, like every other child, to be loved.

However, be aware that autism does affect the entire body.  Peter may be under or over responsive to sensory stimuli.  He may not feel hot, cold, or pain, or over-feel them, or not respond to them.  His diet may be limited due to sensory processing disorder and his gut may be messed up.  Do get as much fiber and nutrients as possible into him, and if you think he’s backed up, miralax has the world miracle in it for a reason.  GITFOM, or ask your doctor. 

I’ve yet to meet an autistic person who is not an artist in some way, be it in writing, painting, minecraft building, legos, or clay.  Expose him to every type of art there is and then some.  Make every kind of playdough you find on the internet until you find your favorite (except the marshmallow one, that one is a total disaster.)  Incorporate different textures, sounds, and scents into art as well as visuals.  Make music every day.  Sing.  Singing is a great, great way to teach autistic kids prosody and get them to have more fluent speech.

Peter will probably be clumsier than other kids.  The physical act of writing will take him longer to learn.  Do teach him, but also give him access to a keyboard so he can express himself in words without having to expend the enormous effort that physical writing takes.  Be aware that autistic people have a remarkable capacity for unintentional self-injury in ridiculous ways, but also, if you see any bruises that you can’t explain, find out where they came from.  Children with disabilities are more likely to be abused than their nondisabled counterparts.  Make it clear to his teachers and caregivers that you expect an explanation for every single mark that you see on him.

Teach him about his body.  Teach him to trust it.  That evolution made him who he is and that’s a wonderful thing.  Talk to a preschool OWL (Our Whole Lives, GITFOM) teacher for resources. Get him to know his body and that it is HIS, his alone.  Teach him to say no, early and often.  Respect his no.  Tell his teachers to respect his no.  This is a crucial, crucial lesson in preventing sexual abuse, which is all too common for people with developmental disabilities.  I didn’t know that I could say no as a kid, and ABA programs teach compliance, not bodily autonomy.  If he wants hand-over-hand help, that’s fine.  But if he wants to struggle for months to tie his shoes, let him – or buy him Velcro ones. 

Unless it is a matter of physical health or safety of him or another person, for example, vaccinations at a doctor’s office or preventing him from running into the river, nobody should be touching him without his consent.  This includes relatives who want a hug or a kiss.  Peter doesn’t owe them anything.  When you let him choose who to interact with, you are telling him that he is a person worthy of respect, and that you will listen and respect him.  On the other hand, if he gets violent towards you or is playing too rough with anyone, do not hesitate to remove yourself from the situation and explain why.

Your doctor may have said that Peter isn’t hitting certain milestones.  This is probably true, but it’s also true that he will almost certainly hit them years later.  Many neuro-typical kids go through a ‘why’ phase at three or four.  Many autistic kids do it as tweens or teenagers.  It isn’t a matter of going through the alphabet in the wrong order, though – it’s a matter of it being a different alphabet altogether.

The only absolutely necessary therapies are 1, whatever teaches him to swim and 2, communication/speech therapy.  Get him an evaluation for an alternative communication device if he seems to be frustrated with his communication skills – see www.niederfamily.blogspot.com for more, best site ever on the importance of alternative/augmentative communication, or AAC.  When he communicates more, he will be able to tell you what he needs, what he likes and doesn’t like.  Autistic people do *not* learn things if we are miserable but we *do* love to learn.  Your goal in all therapy should be making sure that Peter is happy and learning.  It doesn’t necessarily matter what he is learning. 

Push self-help skills.  Don’t do everything for him, or he will go through life like an entitled prince.  Show him how everyone in the family works at whatever they do, and he has to work to take care of himself like everyone else does.  It is much, much easier and faster if you just bathe him and dress him every day, but if you do that you’ll wake up to a teenager who still needs your help in the bath.  Charts are very helpful here.  Put your chores alongside his.  If he shows interest in earning things, you can offer incentives like, a new matchbox car if he brushes his teeth by himself for a week.  (He will need reminders, of course, until he leaves home, but this applies to every child.) 

I’m not going to lie.  Autism sucks sometimes.  It is hard sometimes.  But I won’t warn you about all that stuff because, quite frankly, you’re probably dealing with enough right now. Join the FB group ‘parenting autistic children with love and acceptance’ and if you can’t figure out how to help him through the hard times, ask autistic adults.  We almost always have answers that you haven’t thought of.  For example, many autistics get upset or anxious right before a big storm.  This is because we can feel the dropping and rising of the air pressure and it is really painful.

Be aware that Peter will have some disadvantages due to his autism, but he’s also a white male in American society so he’s already got a huge leg up on the majority of the world.  Do emphasize, early, the importance of looking neat, because, awful as it is, oftentimes people will overlook or excuse the odd behavior of people if they are dressed and groomed nicely.  Of course, don’t torture him with haircuts, let him wear whatever (clean, fitting) clothes he wants, and get all unscented soaps, lotions, etc. 

Don’t push Peter to be like his NT peers, because he won’t be.  He will only ever be like himself.  The chances are high, however, that as he grows older his best friends will be other ‘quirky’ kids, which is why it is important that he knows of his autistic identity early on.  The problem with schools is that they put all the kids together and expect them to naturally form friendships.  That will probably not happen with Peter.  You will need to seek out the parents of other oddballs and arrange playdates.  If there’s another kid who shares his common interests, great.  Don’t just limit him to school friends, though.  Autistic people are really great at intergenerational relationships.  Bring him along to many different intergenerational events and you’ll likely find he connects best with those much older or much younger than him.  That’s fine.  I have friends who are teenagers and friends in their seventies.  It doesn’t matter how old or young a person’s body is as long as their soul is warm and welcoming, and autistic people have a remarkable ability to find fellow members of our tribe.  Remember that a playdate consisting of two kids each on a separate ipad is still a great playdate. 

You are undoubtedly overwhelmed and anxious now.  Somebody has probably said to put Peter in 40-plus hours of ABA (DON’T DO THAT!), or on a special diet, and somebody has probably sent you a stupid poem about Holland which is ridiculous because people are people, not countries.  But you’ve raised Peter for – I actually have no idea how old he is, four or five? – years already and he’s fine.  He will continue to be fine, and so will you.  Just remember:

  1. Listen to him.
  2. Listen to autistic adults.
  3. Don’t abuse him. (see #2.)

 

You’ve got this. 

All the best,

 

Ekie

Dark Humor, Disability, and Community Coping

Why, hello, old blog.  Haven’t seen you in a long time……….

Let’s start with a story, shall we? I like stories.

I’m at the doctor, walk-in urgent care, with my friend Jayne.  We think she has pneumonia, or damp lung, or something else that is resulting in her feeling like utter crap.  So I drove and accompanied her into the exam room because they often leave you there for long periods of utter boredom and we are both bored already but have a unique relationship where we never, ever run out of things to talk about.  The doctor comes in.  He gets Jayne’s pronouns wrong, I don’t say anything.  He asks her to look at a chart and check her medication list.

                “I can’t,” says Jayne calmly.  “I’m blind.”

                I swallow a snort because I’m pretty sure that in that chart it says that Jayne is blind, but then the doctor starts his examination.  The first thing he whips out is…….an otoscope.  No, that’s wrong, but I can’t find the word. You know what I mean, those tiny little light things for peering in eyes?  And he starts to peer into Jayne’s eyes and I……….I crack up.  Completely, totally lose it.  I’m laughing my head off because I know that the eye he is so carefully examining is glass, and within seconds, Doctor gets a very weird look on his face.  Jayne is more patient than I am.  She informs him of her glass eye (which he would know if he bothered to, I don’t know, look at her chart) and he responds by calling in a medical student not to learn about pneumonia, but about – you guessed it – glass eyes.

                It’s months later and that story still makes me laugh.  A doctor! Examining! A glass eye!

                Disabled people almost always think that this story is hilarious.  (Because it is.)  Non-disabled people, and those who don’t spend time in the disability community, generally get confused about it.  They get a weird look on their face because, well, what could be funny about glass eyes?

                I’ll give you another example.  Years ago I was doing personal care for my favorite kid and she goes into a grand-mal seizure.  I call her mom over and we get out the suction and the diastat and the oxygen and in the middle of this the kid projectile vomits.  I dodge out of the way, but her mom gets hit head-on.  Ten minutes later, when the seizure has stopped and everything is calm again, her mom goes to change her clothes and we sit by the kid and we laugh and laugh and laugh, because it was so damn convenient that the vomit hit her, and not me, (I don’t have a change of clothes) and the distance the vomit travelled and the perfect aim of it –

                The person I’m telling the story to goggles a bit.  “But what’s so funny about a seizure?” they ask.

                I try to explain, and fail.  It’s not that the seizure itself is funny, it’s the timing and the vomit and the fact that in the end, everything was okay, or as okay as it ever was.  It’s the basic fact that sometimes, if you don’t want to cry, you just have to laugh, and I think that this fact is at the basis of most disability humor, and is the reason that most disability humor tends to be, well, rather dark.

                As am I; as are we.  Dark as our souls, dark as the blood that pours from our bodies, dark as the nights which are so long, cold and bitter as the winter’s wind.  If we don’t laugh, we’ll cry, so why not laugh?  It may not be funny now, but it will be one day.  I think.  I hope, because sometimes, hope is all we have.  Hope and laughter, and the hope that the laughter will come again.

                2017 was a hard, hard year for me.  It was a hard, hard year for many in the world.  It was the year when I became not a person with a disability, but a card-carrying Disabled Person.  After many years of fruitless job interviews, I applied for and was granted social security disability.  Seeing the reports that the doctors wrote on me was one of the most depressing things I’ve ever experienced.  You think that you’re a competent, capable person, and then you find out that your doctor thinks you’ll probably end your days in a psych ward, or worse.

                I lost friends this year, dear friends who I thought were family, not through death, but through cruel indifference and cutting words.  I had so many good times with them, so many good intentions, but I realized that those don’t mean anything.  My dealings with people will always be just one step away from disaster, destruction, despair.  I mourn these people deeply.  I miss them, but I know that they don’t miss me.  My fingers itch to text: ‘what’s up?’ but I know they won’t reply because they stopped replying a long time ago.  Their ghosts will haunt me for decades.  I can’t hug a miasma but I feel their skin against mine just the same.   

                I had my back surgery, and left my part-time caregiving job because my body just couldn’t do it  anymore. I am now am trying – and failing – to fill up my days in some other way.  I volunteer, I go to meetups, I swim, I walk, I bake, but somehow I still have hours and hours in which I need to get stuff done and yet I haven’t.  I haven’t organized my papers or my filing cabinet since August.  I haven’t filled out the application for affordable housing.  I haven’t really left the house since Christmas unless necessary, because the windchill is in the negative double digits and my entire body says to go back to sleep.

                My entire body is one mass of rock-hard pain from shoveling snow, trying to get my car out.  I sit down and write a list of my blessings: Medication to make me feel better.  Hot pack to put on my back.  Food, including chocolate.  Heat.  Windows that close, blankets that are warm.  Power, and the internet where I spend so many hours.  Small relatives to hold and give back when they cry.  I’ve read that doing this, that counting your blessings, improves your mood.  It doesn’t, not really, but then again, I’m on so many medications right now that I am unable to feel anything at all, not excitement, not anger, just a constant anxiety – nuclear war, losing my healthcare – and a feeling of relief when it’s time to turn out the light.

                Centuries of oppression led disabled people to develop our own culture, part of which is our own jokes and humor.  As people were crowded into institutions, cut off from their biological ties, they created new ones with their fellow disabled people.  When they closed the residential institutions, culture took root in the community, in organizations, in newsletters, in schools.  Most recently disability culture has been flourishing on the internet, enabling people from all over the world to connect with each other and to be the ones laughing at others instead of being laughed at.  Our precious in-jokes, our sarcasm, our biting wit, was born out of necessity.  It was born because sometimes you can refuse to give in to oppression.  You can refuse to give the people in power what they want.  They may control your body but you control your mind.  And so when you won’t give the world the satisfaction of seeing you cry, of seeing you bent and broken, you laugh, because it’s the only thing you can do at all.

            Dark humor also makes an in-group of an out-group.  Our own private jokes and things that we alone find funny are armor against an often-hostile world.  We use it like blankets, huddling around the flame of what only we find funny, keeping each other warm.  We who so often are the butt of jokes can find great pleasure in making jokes that only we understand.  We who are so often excluded from society at large use humor and sarcasm to pretend that we were not hurt by this exclusion, that we would rather be around other disabled people, anyway.  

             Sometimes, non-disabled people simply do not get this.  They don’t understand what is so funny or why we are laughing at what they see as a tragedy.  We see a leg-bag run over by a wheelchair, urine splattered on the floor, and it’s comedy; they see bodily fluids and are disgusted.  But what’s so disgusting?  Disability is natural.  Bodily fluids are natural.  American society at this place and time have determined that disability is a thing to be ashamed of, that our bodies and brains which are so different are wrong, bad, disgusting.  We rise up in the face of this oppression and use our humor and our culture to say, we are here, we are proud, we are not ashamed.  It’s you who doesn’t get it.  It’s you who we make fun of, because that feeling of being in the in group makes us feel powerful in a world where we so often are powerless.

            Sometimes we will take the time to educate non-disabled people, but sometimes, we just don’t have the time or the energy or the inclination to do so.  Explaining something to a stranger will most likely take a fair bit of time as well as have a net negative outcome.  Sharing a secret joke will take two seconds and make us feel good.  So who can blame us if we huddle around our own fire?  You have been excluding us from your campsite for years.  When a non-disabled person assumes that they will automatically gain entry into disabled space, they will often be met with rebuffs not because their own intentions aren’t good, but because disabled people have faced lifetimes of being excluded and harmed by non-disabled people, and so it is not a natural thing to assume the good intentions of others, not when we have been hurt so much.  It’s nothing against the non-disabled person, it is a safety mechanism which we have to put in place lest we be hurt.

          Because we are hurt.  Because we continue to be hurt.  The world is hurting, we are hurting, you are hurting, I am hurting.  I try to remember that the winter is long, but the sunset comes just a tiny bit later each day.

                So what happens now? What can anyone do, in this world so full of people who don’t understand and don’t want to understand?  I drink a lot of coffee and bake a lot of cookies.  The weather warms; I wade through puddles of slush to pick up three dozen balloons for a church event.  They are colorful, bright, bobbing happily in the wind and rain – I know that the world is running out of helium and it’s a precious resource that we shouldn’t waste on a party but I love balloons just the same.  Some part of my heart still finds joy in these tiny things.  Some part of my heart has yet to die off.

                He was examining.  A glass eye.

                We crack up, again and again.

                 

 

 

nb: ‘Jayne’ is a pseudonym and the story is shared with their explicit permission.  Huge bonus points if anyone can find the two references to one of my favorite fandoms.

Not Over It. Not Ever.

It was nearly a month ago now.

A month ago since that night when I was told that I was not fit to be a friend, and that said friend would not allow me to be around them or their son.  A month ago since I cried until I was retching, texted frantic apologies to everyone I knew for existing, seriously contemplated turning myself into the police, hurt myself until I bruised and bled and finally doubled my emergency anxiety medication so I didn’t end up in the hospital.

A month ago.  So short, yet so long ago.

“Are you over it?” a friend asks.

What a stupid question.  What a simple question.  It happened, it is past, it is over.  I should be over it, this I know. I have talked it over with Naia-the-new-therapist, I have talked it over with friends, with my mother.  I have deleted all evidence of our nine-year relationship, thrown out the pictures, the invitations, erased their presence from my social media.  I have scrubbed myself clean, realized that I did not commit any crimes, only a slightly-more-awful-than-usual social gaffe, and have allowed myself to be have conversations with children again.

But am I over it?  No.  I am not.  And I probably never will be.

I am still trying to tell people what happened.  I am still unable to do so without crying.  I belong to a religion that does not believe in sin, yet I cannot help going over and over and over my behavior, berating myself, physically beating myself for a crime that I honestly did not know I was committing at the time.  Sometimes I think that this is why Catholics have kept up the tradition of confession.  Five minutes in a booth, ten minutes on your knees at the altar, and whoosh, your slate is wiped clean, your soul is unsullied, washed over like the cold ocean tide coming in to erase any evidence of footprints.

My autistic brain replays the day and the deed over and over.  What could I have done differently?  What should I have done?  What should I have known?  Was it a mistake to reach out in friendship at all?  If I had only stayed in my house that day then nothing would have happened.  How stupid am I – stupid, stupid, stupid – to believe that I can be around people and not hurt them?  I obviously did hurt them.  I hurt people.  I should be in jail.  Isn’t that where people who hurt others go?

“You didn’t hurt them,” Naia says, over and over and over.  “You offended them.  There is a difference.”

I know, intellectually, that she is right. I threw no knives, I fired no gun, I crashed no car.  Yet my behavior and my words hurt them, much as their behavior and their words hurt me.  I think that I must deserve this.  I think that I must punish myself.  Maybe if I punish myself enough, then I will not make the same mistake in the future?  Maybe if I give myself one more scar, I will remember to just shut up?  Maybe if I just do this, try that, try harder, then my social mistakes will be over and I will stop offending and alienating people.

But I cannot try harder than I am trying now.  I cannot try harder than I tried on that day.  And I cannot forget, or get over, what happened for a long, long time.

Thirty years ago I interrupted a teacher in preschool and was sent to a time out in the hall.  The hall was long, dark and scary.  I sat and I cried and I cried.  The teacher’s name was Susan.  She knew that all preschoolers cried when they got in trouble.  She didn’t know that I still haven’t forgiven myself for interrupting her three decades later.

Fourth grade – being late to school.  Sixth grade – a flippant remark.  Eighth grade – offending someone.  Each of these incidents is scarred in my brain.  They are wired just as firmly as the titanium rod that holds my friend Penny’s spine together.  They will not go away.

Each is a reminder that I cannot trust myself, and I cannot trust other people.  Yet it sets off a war inside myself, for I am naturally trusting, naturally friendly.  It is only the fact that I’m terrified of hurting others that people ever think I am reserved or shy.  The only reason I stutter sometimes isn’t because I can’t find the words, but because I am afraid that the words will be the wrong ones.  That these words will lose me, again, friends and relationships that I value.

I love deeply and fiercely.  I hug people so hard that they hurt.  I try to keep in touch with people, to show them that they are valuable to me.  Because of my disability, I require more help than most people.  I am always conscious of this, always looking for ways that I can be less of a burden, more of a help.  I bake, I drive, I do what I can.  But sometimes it feels like I live my life as an apology for existing.  I want to live an authentic, autistic, enthusiastic life, yet it has been ground into me from before I could talk that my way of existing is not how other people exist.  That most of the time, I am wrong.  That most of the time, I should just. Shut. Up.

Which really……isn’t…….me…….at ………all.

I cannot live and be happy and be quiet all the time.  I love to talk, love to connect, love to give speeches and presentations and answer questions and help people to understand things.  I love to learn, my logical brain seeking an answer to everything.  I love to laugh, and pet dogs, and snuggle babies.  I love to advocate and hike and do crafts and sing.  It’s taken me over three decades but I have finally decided that most of the time, I do love living.

But no life comes without pain.  And my life, it seems, is sometimes cursed because it is precisely in doing what I love most – connecting with people – that I occasionally hurt them.  I meet strangers and they are speaking Serbian and I am speaking Hindi but neither of us notice and so I stick to my Hindi cultural mores and express things in my Hindi way and I don’t know that I’ve just called them a nasty word in Serbian, because to me the word means something completely different.  I was talking about panthers and they were talking about ducks.  We were in the same theater but watching completely different plays.  Only the characters all look the same to me, so how was I supposed to know?  How do I generalize a life’s worth of social skills training, formal and informal, so that I stop making mistakes?  I can’t.  I can either give up on living completely or accept that sometimes, I will hurt people.  At some time, I will probably hurt you.

And sometimes if I’m lucky, sometimes people will give me the chance to explain. Years ago at a beach house, my friend Lizzie was walking around in her bikini all day.  I kept imploring her to change into clothes.  After a few hours of this, she took me aside.  She wanted to know if I was offended by how she looked in her bikini.  What?  I was aghast.  No!  I was concerned, because she had been swimming, and my doctor had recently told me that you could get a nasty infection from staying in your wet bathing suit after swimming.  I didn’t want her to get sick.  I took my doctor’s words as law.  I had absolutely no opinion of how she looked, only that she stayed healthy.  Oh, Lizzie said.  I won’t get sick.  You can stop worrying.  But it was nice of you to be concerned about me.  She could forgive me for my comments.  She could give me a chance to explain.

Unfortunately, many times,  people will not give me a chance to explain.  Another friend at church was on the committee that asked members to be on various committees.  I ventured to him that I might volunteer for X.  He explained that he would never nominate me for any committee because I had made too many social errors, that people didn’t always like me, that I sometimes said the wrong thing.  I accepted this, and thought it over.  I thought, this is true.  He is right.  I don’t want to make any trouble.  I don’t want to cause people to have to work more because, after all, understanding and communicating with me does take some work sometimes. Since he said that, years ago, I have never volunteered for a single committee no matter how many times people have asked the general congregation to do so.  I have done single tasks alone but that is all.  I am still, to this day, too afraid to be a part of my church fully because of this one person’s words.

This fall, I was seriously considering venturing out of my shell more.  Now that I’ve qualified for social security (long story some other time) I have more free time.  I thought about being on a committee or two.  My brain, always slow to process human interaction, thought that perhaps I had something to offer, that perhaps that friend didn’t know me that well, that perhaps I could contribute something of value. And then a message came from someone that I loved, whose son I loved.  A message telling me that I am not only unworthy of their respect, but that I am unsafe, evil, all the bad things that ever existed in the world.

Then the tears, and the blood, and the pain that seems to radiate from my fecked-up brain and body.

It has only been a month.

No, I am not over it yet.

It will impact my behavior and thoughts for years to come.  It will be the niggling seed of doubt long after this friend has forgotten what exactly I did.  I will never forget.  I will never stop replaying that scene.  Some people’s memories change over time.  Mine don’t.  In my memories, I am always in the wrong, and I am always deserving of people’s wrath.  It’s another neural pathway cementing my PTSD, it’s another thing that I cannot forgive myself for.  Definitely not now, maybe not ever.

I’m not okay.  I never was, I never will be.  So if I don’t seem to relax around you, if I seem tense or unhappy, it is not due to you, it is due to me.  Long experience has shown me that I cannot trust people because sooner or later, I will hurt them, I will hurt you, and that is truly the very last thing I ever want to do.

If the road to forgiveness starts with myself, then that is a path I doubt I will ever set eyes, much less walk, upon.

 

 

 

 

Abilities Expo Review

Have you ever heard of the Abilities Expo?  Have you ever wanted to go to one?

Abilities Expo ™ bills itself as ‘Inspirational, Unforgettable and Coming Your Way.’ It goes on to explain that ‘Abilities Expo is about bringing necessary products and services together under one roof for the community of people with disabilities, their families, caregivers, seniors, and healthcare professionals.  It’s about introducing opportunities that can enrich your life….especially ones that you never knew were out there.’  Abilities Expo happens all over the United States in places such as LA, Chicago, DC, Houston, and Boston, as well as in Toronto, Canada.  It has been going on for nearly 40 years, and, granted, I was not alive 40 years ago, but I am alive now and it was being held in my city so I went down to check it out.  After all, it said ‘disabilities’, and I’m disabled, and I’m a member of the disability community.  Therefore, Abilities Expo should be for me……right?

As it turns out, not so much.

Abilities Expo, I have learned in this and in the past few years, is not actually for everyone in the disability community.  It is for a very small subset of the disability community: white wheelchair users with money.  (I say white because, despite the diversity of my city and the disability community, I saw very few POC there, and very few POC in their printed advertised materials.) Although I am white, I am not a wheelchair user and like most people with disabilities, I live below the poverty line.

However, it should be noted here, Abilities Expo is free.  FREE!  Hey, can’t pass that up.  All you had to do was register, answer some mildly-invasive personal questions (what is your disability? Gender? Age?) and get a plastic bracelet slapped on you before you entered. Although I did pre-register, I hate those bracelets – I always tear them to bits in hospitals – the line was long to check in and I didn’t feel like waiting and so my friend, Rae, and I bypassed the registration and just walked in – and found that nobody was checking the stupid bracelets anyway.

We walked down the first aisle, which had non profits on it.   There were not nearly as many in previous years, and those that were there were places with significant endowments.  Although I was unable to find out the rate to rent a booth from their website, a friend who used to exhibit there has told me that the cost, even for non-profits, is incredibly expensive, and you cannot possibly have the simplest exhibit for the three days for under $1000 dollars.  Considering that they charge for things such as trash baskets and each individual folding chair, I am not surprised.  So the real grass-roots organizations run by actual disabled people are not represented.  This is very sad, as it is these organizations which are the heart of the disability community and deserve to be treated as such.

One thing that I always dislike is a hard sell.  If I am going to spend money I am going to spend it wisely.  I plan out my purchases, do research and always see if I can buy used first.  Like the vast majority of PWD, I live on an extremely limited income.  However, you would not know this by going to the Expo! In fact, their exhibitor webpage proudly touts the fact that the aggregate income of PWD in the US is over $1 trillion.  That is a number so big I literally cannot conceive of it.  However, I’m a great browser, and I was happy to browse some things and dream, until the sales pitches began to get more and more aggressive.  At least twice, I had to flat-out tell people, “I live on a very limited income and this product is nice but there is no way I will ever possibly be able to afford it.”  You would think that a company dealing with disabled people would know this?  Apparently not.

One thing I did like was what I call the trick-or-treating aspect.  You are given a reusable bag and you – okay, I – go around to all the booths with candy and get a piece.  It’s exactly like trick or treating!  The bonus is that if you forgot a snack and can’t pay for the overpriced junk at the concession stand, you can have candy instead.  Luckily, I’ve been to the Expo before so came prepared with water and snacks.

The water is important, because unless you are a wheelchair user there are not that many places to sit.  Since the booths have to pay to rent each individual chair, there are few chairs available among the exhibitor booths and if you want to talk to an exhibitor you have to stand there.  My back was aching before we had gone all the way through.  There is a large area with tables and chairs as well as a sort of staging area, but these were removed from the space with the booths. 

One thing that made me sad as a non-wheelchair user was that there were various workshops and events going on throughout the day, but few of them applied to me. The main events included wheelchair skateboarding, wheelchair dancing, and power soccer.  Although I appreciate that they were trying to showcase that people in wheelchairs can do physical activities and sports, it did ring faintly of the idea of the super-crip, the superhero who happens to use a wheelchair but who doesn’t let that stop him from doing anything.  I know many people who use wheelchairs and the fact is, sometimes they do stop you from doing things, just as my autism stops me from doing things.  I dislike the idea that a quiet, sedentary life cannot be equally as fulfilling as one where people do flips and tricks in customized, flashy sports chairs.

The workshops, no matter their subject matter, were all inaccessible to me.  This is because they took place in a roped-off corner of the enormous exhibition hall, and despite the fact that they had CART, you were essentially still surrounded by the Expo.  I honestly do not know how people paid attention to the slides and voices of the presenters when there was so much going on around them.  Maybe you had to be really, really interested in the subject?  All I know is that I wasn’t.  The workshops on the day I went included things about wheelchair travel, horse therapy, and a new kind of physical therapy.  On other days, medical marijuana, emergency preparedness for people with disabilities, and sleep issues were discussed.  A number of the workshops were put on by people who wanted you to buy their product, service or therapy, although, since I did not actually go to any, I cannot comment on how strong their pitch was.

Of the floor space at the Expo, at least two-thirds of it was taken up by huge, shiny vans, fancy wheelchair ramps, new-fangled hoyer lifts, and bicycles for every person which probably cost more than most disabled people make in a year.  The huge wheelchair conglomerates like Permobil and Braunability both had enormous displays.  There were new vans with new lifts, new seating options, new everything.  They had professionals in matching shirts trying to sell people on the idea that if they just bought this product, everything would be better.

 There was a great exhibit by a nationally-known nonprofit, Easter Seals, on adaptive products and toys, some of which you could borrow through a lending library that they have, but other than that, there was very little you could access without having money.  I mean, if I didn’t hate boats I might love to go on an accessible cruise, but the fact is that vacations are out of reach for the majority of disabled people.  Abilities Expo isn’t showcasing abilities at all; it is showcasing things that the average disabled person cannot ever dream of affording.

As Rae said, looking at the bicycles, “I really want to try one, but it would just make me sad that I couldn’t afford it.”  This, to me, was the crux of the problem with the Expo.  It is not meant for your average disabled person.  It is meant for a white, wealthy person in a wheelchair – and considering that there were two booths with new kinds of penile catheters and no women-specific booths at all, I suspect it is meant for men.  And hey, what do you know: in the hierarchy of disability, white, cis, male wheelchair users are at the top.  They are the ones leading many disability organizations.  They are the ones in power.  POC, GLBTQ, people with mental illnesses and developmental disabilities – we are just not on the radar for this kind of thing, because when Americans think of disabled people, they think of Christopher Reeve.  They don’t think of me, or others with invisible disabilities.  The very lack of seating at the Expo brought this point home quite strongly.

So – Abilities Expo is coming to your area.  Is it worth going?  Well, if you have a kid in a wheelchair, I would say yes.  This is because there are a *lot* of people on wheels there and it is a great chance to expose your kid to the idea that people like them grow up, have families, live and work in the community.  There are also lots of other kids in wheelchairs, which can be wonderful if your kid doesn’t have any wheeling friends.  The majority of adults in wheelchairs were happy to talk to kids and their parents and serve as role models.

I also think it is worth going if you use a wheelchair yourself or are going with a friend or family member who does.  Some of the products, unattainable as they may be, are pretty darn cool, and there is nothing wrong with dreaming. But if you have an invisible disability?  If you don’t know anyone else who is going?  Save your spoons and skip it.  The Expo is not made for you or me.